IGC Bone Research Team

IGC Research Nurse Team specialising in Genetic Bone Disorders and Inflammatory Bowel Disease

[Sinead Rhodes @SineadRhodes]

Delighted this paper on masking in neurodivergent girls is now published, linked resources for parents and teachers below

[Dervil Dockrell @dervidock]

@kathrynberg_ and I were back in @ScotParl today, sharing the results of the hEDS-START study at a round table hosted by @michaeljmarra, and asking MSPs to commit to the development of a care pathway for hEDS/HSD patients in Scotland. #heds #hsd

[Michael Marra MSP @michaeljmarra]

I hosted an Ehlers-Danlos syndrome roundtable to bring together @ehlersdanlosuk, parliamentary colleagues, clinicians and those with lived experience of the condition to discuss EDS and particularly the pressing need to establish new care pathways.

Thank you to all who attended.

[Sinead Rhodes @SineadRhodes]

Me on the 6 o’clock news talking about EPIC Think Learn @InformEpic

[Kay Julier (she/her) @KayJulier]

A very well-deserved recognition of your passion and perseverance! Congratulations 👏

[Dee Davison (she/her) @deedavison66]

It was a joy to see @SaraBrown describe her experiences of sharing her clinical research on excema @CODIfringe. Sara had us all examining our hands, ably assisted by the irrepressible @suziemo. Lovely @EdinUni_IGC colleagues @YLSSarahRobbo & @genscot were shortlisted for awards.

[OhTWIST.bsky.social now too @H2OhTwist]

Share the #EDSToolkit for doctors spearheaded by Dr. Reinhold in 2018 for NHS GPs, but available to anyone willing to learn more about #EhlersDanlos & #hypermobility Spectrum Disorders!

https://t.co/89gGnow5Xs

#MedEd #FOAMed #MedTwitter #NEISvoid

[Cathy Abbott @CathyAbbottLab]

@drsarabrown giving us a brilliant Cabaret of Dangerous Ideas talk at the Impact Festival 👏

[Dee Davison (she/her) @deedavison66]

This a'noon, I was absolutely delighted to attend the 1st @EdinburghUni#IMPACT2024 Awards event & see 2 wonderful colleagues win the 'Responsible Innovation & Engagement' award. HUGE congratulations @kathrynberg_ & @dervidock on your fab hEDS-START project. @UoE_CGEM @EdinUni_IGC

[barbara hauser @Ba_Hauser]

Proud to be part of the team. Just to clarify the work was mainly done by Elizabeth Orhadje, @kathrynberg_ and @Stu_Ralston. Elizabeth gave an excellent presentation 😃

[Kathryn Berg @kathrynberg_]

A big thank you to @JGjanegreen, @DrSarahBennett, @SEDSConnective, @cjcrompton, @SineadRhodes and @KimiaWitte for all of their advice and support with this section of the #TranslatingResearchIntoChange report!

Read here: https://t.co/xdqZbC6W1b

[Kathryn Berg @kathrynberg_]

5/ 47% of our Scottish survey respondents recorded a score of ≥32 in the AQ50, suggesting that people with hEDS/HSD show high levels of autistic traits. This could also point to an under-diagnosis within the hEDS/HSD community, though further research is required.

[Kathryn Berg @kathrynberg_]

4/ To further investigate the rates of autism reported in our hEDS/HSD population, we used a tool called the AQ50. Though not a diagnostic tool, its developers note that only 2% of a non-autistic population would record a score of ≥32 in this questionnaire.

[Kathryn Berg @kathrynberg_]

3/ It is important to point out here that 90% of our study population identified as female, while autism and AD(H)D are generally more likely to be diagnosed in boys and men.

#hEDS #HSD #ASD #ADHD

[Kathryn Berg @kathrynberg_]

2/ This graph shows the diagnosis rates of autism, AD(H)D, and dyslexia reported by Scottish respondents to the hEDS-START survey, compared with UK prevalence rates from @Autism, @ADHDUKcharity, and @BDAdyslexia

#hEDS #HSD #ASD #ADHD #Dyslexia #EDSAwarenessMonth @ehlersdanlosuk